Monday, November 23, 2015

Bits and Pieces: MS Diversions

Wow, I just checked and it’s been almost 7 months since I last did a “Bits and Pieces” post. These posts, compendiums of the latest and greatest MS news and info, have long been a regular feature on these pages. Somehow, I’ve really let things slide. Seems I’ve been a very naughty blogger. The blogging police are probably getting ready to mount a raid on my computer any day now, so I better get back on the beam, lest I be found guilty of blogging negligence and sentenced to reading the comments section of some celebrity gossip website until my brown eyes turn blue. For the record, Justin Bieber is NOT hotter than ANY of the guys in One Direction and anyone who thinks so is a big fat stupid loser!!!!! And the budding romance between Gwen and Blake is like the best thing that ever happened in the world ever ever ever!!!! I might have to cut down on watching of kitten videos so I can soak up every word being written about those two crazy love birds. OMG.

Just to refresh everybody’s memory, Bits and Pieces posts are collections of interesting items of MS related research, news, and other Internet MS flotsam and jetsam that have caught my attention in the recent past. Though there’s certainly been plenty of impactful MS info floating around the inter-webs during my long lapse in trying to anthologize it, I made the command decision to devote this post to a collection of MS related online communities, blogs, and other sites that I think might be of interest, places which can serve as welcome diversions in the online MS world. Personally, I can sometimes get so caught up in parsing through all the latest research that I neglect the touchy-feely human side of things. The sites that follow offer interesting twists on typical online forums, blogs, and whatnot. Especially the whatnot, along with the doohickeys and thingamajigs.

Please note, I know there are lots and lots of MS themed blogs and communities out there, and by calling attention to these few I don’t mean to slight any of the others. This isn’t a “best of” list, just a compendium of places that have stuck in my brain pan lately. So, without any further hemming and/or hawing, here are some suggested sites upon which to aim your eyeballs…

♦ Let’s start with a site that has long been near and dear to my heart, MS Kurmudgeons Korner (click here). MSKK, as it is affectionately known by its regulars, is an under the radar MS forum that is completely beyond the reach of any Internet search engines, making it accessible only to those in the know. The site adheres to a strict privacy policy, meaning that what is said in MSKK stays in MSKK upon pain of death. MS Kurmudgeons Korner is so named because it is a self-avowed rainbow and unicorn free zone where people are free to discuss the fact that MS sucks huge hairy monkey balls without fear of stepping on anybody's rose-colored glasses. Not that the place is without humor, as at it's often more fun than a night at the GiggleSnort motel, but it is definitely Nowheresville for those prone to utterances like “I have MS but MS doesn’t have me”.

Since MSKK is a closed community, it’s rare that the gates are thrown open in such a public fashion as this. However, due to the usual ebb and flow of the Internet, membership is down and an infusion of new blood will be welcomed. In all honesty, because of the progression of my illness and the incredible amount of time it takes just being sick (dammit), I haven’t been hanging out there nearly as much as I have in the past, but I guess that’s part of that whole ebb and flow thing.

So, if you are an MS cranky pants with a sense of humor, by all means mosey on up to MS Kurmudgeons Korner and knock on the door. You’ll be asked to sign a virtual privacy policy, and then introduce yourself with an opening post. Current members will then say hello and ask a few questions so that you can get a feel for them and them for you. After you tell a little something about yourself and prove that you’re not an undercover unicorn, you’ll soon be given free rein to join the community.

♦ Next up is a blog called Tripping on Air (click here), which is exceptionally well written by a classically trained singer with MS who lives in Toronto. The writer of Tripping on Air manages to blend her sardonic wit, keen sense of the absurd, and terrific observational skills into essays on everything from miracle cures to wetting the bed (click here) that have me laughing out loud and nodding in agreement, even though she sometimes talks about girly stuff that doesn’t quite jibe with my manly universe filled with bad zombie flicks and the Boston Red Sox. The blog’s only been around for about five months, so there’s not a huge amount of content, but what is there is well worth a look.

♦ My Counterpane (click here) takes a unique approach to building an online MS community. The site is built around members’ moods, as expressed by “moodifiers”, entries describing a person’s mood and what’s making them feel that way. What really sets this site apart is the ability for members to include videos in their moodifiers, so lots of folks choose to express themselves via short video clips rather than the written word. This all probably sounds kinda weird, but it’s actually pretty engaging. Posts can be sorted by mood, so whether you’re feeling angry or hopeful it’s easy to find others experiencing similar emotions, and members can build a little moodifier universes of their very own by following other members.

I personally feel much more comfortable behind the camera than in front of it, but the ability to just sit at of your WebCam and describe whatever emotions life and MS happen to be throwing at you at any particular moment does have its appeal. Unfortunately, these days I’m afraid I often look like one of the zombies in those bad flicks I love so much, and my WebCam would scurry off in horror if I ever turned it on when I’m in such a state. Good thing Rick from The Walking Dead hasn’t chanced upon me, otherwise I’d definitely have a knife sticking out of my head. Still, just having the option to communicate by video makes My Counterpane unique, and that in combination with its mood-centric emphasis has lots of people hooked.

♦ One of the most visually appealing MS blogs I’ve come across is Wheels & Red (click here), put together by an MSer in the Pacific Northwest who goes by the moniker "Wheels" (his wife is “Red”). Wheels (real name Kellen) was diagnosed in 2010 with progressive MS at the age of 25. His wife Meg is a photographer, and a quite talented one at that. Kellen is a very good writer, and his subject matter diverse. Now on full-time disability, Kellen uses his enforced freedom to explore his inner and outer worlds, and presents his viewers with an always interesting hodgepodge of visuals and essays that are both thought-provoking and entertaining.

The only thing I don’t like about Wheels & Red is that it makes me feel old. The writer and his wife are young and Bohemian in a very Pacific Northwest kind of way. Problem is that I’m now a 52-year-old fuddy-duddy who used live a Bohemian existence myself, back before our culture turned a generation of pierced and tattooed twentysomethings into a marketing demographic. My friends and I were slackers about a decade before slacking was a recognized social phenomenon (I believe the term was first brought into mainstream consciousness with the 1991 film “Slacker”). Wheels & Red reminds me of a time before I capitulated and allowed myself to slide down the slippery slope towards 9-to-5 normalcy – for a time I even wore a tie to work every day. Ack! Now, despite the fact that my own disease enforced freedom has returned me to a warped version of the slacker lifestyle, I still rue the fact that regardless of my loud and boasting youthful protestations that I would do no such thing, I sold out. And rather cheaply, at that.

Wow, where did that bit of existential angst come from? I guess a really good blog can do that to you, get your thought processes shooting off on unexpected tangential extracurricular activities, which I suppose is one of the great benefits of any successful creative effort. So, I guess the above paragraph marks Wheels & Red a success. Hopefully, whatever tangents it sends you off on won’t involve self chastisements decades in the making. May all your tangents be happy ones…

♦ Shift MS (click here) is a growing social network for MSers, founded by a young man in England with MS as a way of building connections with others who share the diagnosis. The site is very well put together, with lots of interesting features including a members’ forum, a variety of online groups to join, plenty of MS research info (including a large library of video interviews with MS researchers), and advice on lifestyle and medication choices. The site is pretty slick, so slick that at first I suspected it must have been created by one of the pharmaceutical companies as an undercover effort to collect valuable data on MS patients (I’m not being paranoid; some of the most popular MS and health-related websites are actually just such Trojan horses), but upon further investigation I discovered that Shift MS is a registered nonprofit in England, and appears to be run by a bunch of people with MS for the sole purpose of helping other people with MS. How refreshing! In spite of its numerous offerings, which could make for a cumbersome Internet experience, I found Shift MS to be quite easy to navigate and filled with interesting nooks and crannies. The site has a nice international flavor to it, also, with large groups of Brits, Americans, Canadians, and Aussies represented. Nothing like sharing a potentially crippling disease to break down international borders, huh?

♦ For those who eschew talking to real-life human beings and would rather converse with weird web-based artificial MS patients who hardly ever blink and could easily scare young children, do I have a site for you! The Consortium of Multiple Sclerosis Centers (CMSC) has created a bizarre little program called “My MS Conversation”, that you can download by (clicking here). If you are asked to enter a code for downloading, try 54S2. I promise, the program is absolutely safe, at least from a computer virus standpoint, though I can’t guarantee that using it won’t leave emotional scars.

Upon opening the program, you are “greeted” by four virtual animatronic “people” who move like they are inflated with helium and have big perfectly round largely unblinking eyeballs. One of the characters is a “nurse moderator”, and this jolly foursome is eager to engage you in “conversations” about managing multiple sclerosis. As you can see in the screenshot on the right, this is a very inviting bunch, so unnervingly bizarre that you might be fooled into thinking that you are interacting with actual animated virtual MS people, and not MS zombies just waiting for you to get close enough to your computer screen for them to reach out and EAT YOUR BRAINS! Lucky for me I'm hyper aware of the coming zombie apocalypse, and not easily fooled. This program would be better titled "The Limping Dead", except no matter how much I click on them or hover my face dangerously close to the screen just tempting them to reach out and EAT MY BRAINS these MS zombies won't get up off their seats, so I can't tell just how disabled any of them are. They look pretty healthy, though, which must mean that they've tricked plenty of other people into getting close enough to their computer screens for them to reach out and EAT THEIR BRAINS!

The creation of My MS Conversation was partially funded by two pharmaceutical companies, Teva and Mallincrodt. Teva is the manufacturer of Copaxone, the best-selling MS drug which last year brought in $4 billion in revenue. Yes, that’s “billion” with a “B”, which also just so happens to be the first letter in BRAINS! So, as you might guess, most of the “conversations” that the MS zombies engage in have to do with taking disease modifying treatments. But no matter, the entire experience of using the program is so otherworldly that I find it almost impossible to concentrate on anything the animated MS zombies are saying, as all other thoughts in my head are crowded out by one huge “WTF?”. As I might have mentioned before, I have a huge affinity for all things zombie, but this program could be the one exception. Still, I just can’t get myself to delete the damn thing from my computer, as every now and then I find myself clicking on its icon just to make sure I wasn’t imagining it all or that I didn’t conjure up My MS Conversation in a scary dream one night after eating a batch of bad enchiladas. But no, the program always turns out not to be a product of my warped imagination, but instead of somebody else’s. I definitely want no part of whatever enchiladas they were eating. Or were they maybe – EATING BRAINS!?!?

You were my only one love. The only MS blog I was addicted to/in love with and now I've met another lover. Tipping on Air. And ironically you introduced me to him/her/it. (Do blogs have a gender?) Kamikazee had me laughing yesterday and Tipping on Air crying today. Aaah its going to be good.

Marc,Excellent sites to explore.Curiosity now stemming from Quinine found in USA tonic water. Have you tried? Used to treat Malaria. To obtain the higher dosage, the source of the bark, to extract. Trying to control Spasticity.

Also, Medical Marijuana, see New York will give patients with certain serious illnesses faster access to medical marijuana under legislation signed Wednesday by Gov.. how does that help you?

Wow! I feel as though I fell into a hole where there were others that spoke my language and understood me.

I have had rrms for 30 years and just this last year turned the wrong way and went into the spms roach motel.

I really want to scream and turn around. But I found that you can go into spms but you can never leave. At least not happily.I have had the whole shebang: avonex, blindness, numbness, mri's, seizures etc. etc. The most recent of my annoyances is "I have ms and am better for it!" NO! I have ms and I deal the best I can!Thanks for letting me rant a bit!I love this blog!

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...